Judy Oliver grows tense as she watches the pediatrician holding the phone. He is listening to a specialist giving him test results on Karen, Judy’s 6-week-old baby girl. As he hangs up, she recognizes that foreboding, telltale look we never want to see on doctors’ faces.
The doctor takes a deep breath and averts his eyes briefly. Then he tells her: Her child is afflicted with Down syndrome. Judy’s spirits sink in despair: Why me? Why me?
That was then. This is now.
Now is 44 years later. Judy, 76, is a retired elementary teacher. She sits in her sunlit day room and looks fondly at a woman across from her. The woman has the day off work and has interrupted homemaking tasks at her own residence to be here in Judy’s rambling ranch-style home in Chula Vista. She is smiling and joking, totally at ease in this conversation among adults.
The woman is Karen, and she’s that long-ago baby girl of Judy’s, now grown to middle age. She’s now the best friend of the mother who raised her after a divorce. Karen still has Down syndrome — you don’t lose that — but no longer does it seem a calamity.
But what you can lose, because Karen did it, is the stigma attached to a condition that a few decades ago was referred to medically with a straight face as “mongolism.”
Judy walks out of the room, and Karen begins explaining how she picked her way through the broken glass of prejudice and ignorance.
Karen is not a typical person with Down syndrome, because there is no such thing. As with almost every other human condition, Down syndrome affects people on a continuum, from severe to mild. However, we tend to lump all together, which is strange because we don’t similarly group beautiful people or athletes: We look at those as individuals.
Karen is fortunate to be near the top of the continuum. She is more outgoing then you might expect. Her body is less stocky and her movements more lithe. Her voice has only traces of the singsong cadence common to this condition. Her eyes are not quite of the slant shape that gave Down syndrome people that nasty name, but we’ll explain that later.
She graduated from Hilltop High School in Chula Vista and received an associate degree from Southwestern College in child development. Karen and Judy say both programs were in the regular curricula, not special education.
Karen works at the Boys & Girls Club in Chula Vista as a minimum-wage teacher’s aide for 15 hours a week, and has for 22 years.
“I help out the kids and the staff,” Karen says. “They understand my weaknesses and stuff; my boss knows I have Down syndrome, and says I need to do this and that, and I say, ‘Yeah, I can do it.’
“Basically, what I do is help my boss because she has a lot to do, and you know, it’s too much for her.”
Karen works in the preschool and oversees the play activities of the smaller children, along with other staff duties. If a fight breaks out between the kids, she steps in: “I say, ‘Now, kids, use your words instead of your hands.’ If there is a big problem, I go tell the teacher, because sometimes I can’t deal with things like that.”
Karen lives as an independent woman in her own one-bedroom apartment a couple of miles from her mother’s home. She does her own shopping, cooks meals, cleans and pays her own bills.
She receives Section 8 low-income housing assistance and financial help from her mother. She also receives Social Security as a death benefit from her late father. But her daily regimen is hers to control.
Karen, why do you prefer to live by yourself? You’ve got a big house here with your mother, and your brother lives next door.
“Because I’m totally independent now, and I wanted to go out and see the world. Besides, it was my time to not be the baby anymore.”
That’s also important for Judy, who is ever-mindful of the time Karen might be completely on her own.
Her passage to self-sufficiency was not as smooth as the end result might suggest. In junior high, that bastion of human sensitivity, she was first referred to as a “retard.” She didn’t recognize the word, but the nastiness was clear. Karen went home in tears and asked Judy what it meant.
That led to a sit-down explanation of her condition, which she accepted placidly. Judy suggested a simple operation to minimize the slant of Karen’s eyes and make them look more normal. Karen agreed, and the results are apparent three decades later. Karen says the cosmetic alteration enormously improved her self-image.
Karen was well-liked in high school because she was friendly, engaged in no teenage catty sniping, and did not compete for status.
However, high school was the time of a trauma to last a lifetime. She was raped. Judy says a police report was filed, but she reluctantly decided not to push criminal proceedings out of concern for Karen’s emotional well-being.
Judy says, “Afterward, Karen said, ‘What would happen if I got pregnant?’ I said, ‘Well, you’d have a baby. But, remember, I told you that it’s unlikely you would have a Down syndrome child.’ And she said, which I loved, ‘Well, what’s the matter with that?’ ”
Karen doesn’t drive, so she is dependent on public buses, and it will come as no shock that those can be adventuresome. The best one can hope for is a boring ride. Recently, Karen related an experience to her mother.
“She calls me every day when she gets home because I’m a worrier. One day she says, ‘Mom, you’re never going to guess what happened on the bus. This guy sitting next to me showed me his thing.’ I said, ‘What did you do?’ She said, ‘I just looked away.’ Then she said, ‘Don’t worry, mom. I’ve already called the bus company, and the police and reported it.’”
Though she doesn’t currently date, she had her young-girl adventure with romance.
“He was in the Navy, and he was nice and he wanted to get married, but I wasn’t ready for it because I was teenage. I didn’t want to do that, and I just said I’m sorry, no. He was nice, but I just didn’t feel a connection.”
What did your mother say?
“She said, ‘You made a good decision, Karen.’”
Do you regret not having your own children?
In answering this, she seems unaware of the biological clock. “Not yet. Eventually, when I find Mr. Right out there.”
Do you have a lot of friends?
“I meet a lot of people that are nice. I talk to them, yeah. But I don’t talk to them very often because I’m busy with my life, and busy with work and my family, and sometimes I realize that, and I say to myself, ‘Karen, what’s more important: having a friend or not having a friend?’ So I try to call them and say, ‘How are you?’ ”
I say to Judy: When I asked Karen what she thinks about when she’s alone, she couldn’t respond.
Judy nods. “Mm-hmm. She compensates. Some people, until they know her, think she’s even higher functioning, but she doesn’t want people to think she doesn’t understand. And so, she goes, ‘Yeah, I get it,’ when she didn’t get it. But that shuts people up.”
Judy adds, without being asked, “I couldn’t have a better daughter.”
Though Karen functions independently, she gets periodic advice on daily living from a state-funded program called P.R.I.D.E. Inc.
What would you like to do in the future?
“Personally, what I’m doing now, stay at my job. And in my future there will be a husband. I want to get married. I just need to get out there in the world to find somebody.”
Karen, by the positive way she has lived her life, has debunked ugly labels. But, more important, she has also overcome them in her own mind. So, if someone were to call her “retard” today, she’d just think they were weird and in need of a lot more help than she.
More than 101 million working-age Americans do not have a job — Karen is not among them.
More than 2.3 million Americans are behind bars — Karen is not among them.
More than 23.5 million Americans have a drug or alcohol addiction — Karen is not among them.
Of Americans 25 and over, 113 million have an associate degree or above — Karen Oliver is among them.
Down syndrome — don’t be surprised.
Fred Dickey’s home page is www.freddickey.net
His email is [email protected]